Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Now getting round to reading a thread or two.

My thread of food issues will help but...
No guarantees...

Is this a joke?

I searched for a Lupus Check-In thread. I did not see a thread but I am not sure if it’s worth making a thread. It seems a lot of people on this forum have Fibromyalgia, I’m not sure about Lupus.
I wonder if a lot of people have several unpreventable autoimmune diseases. I have several.

@Cocosurviving, it seems to take a long time for a rheumatologist to reach a diagnosis of Lupus. In the meantime, a patient can get a "smorgasbord" of ailments, as you seem to have.

My wife had Epstein-Barr as a teenager. After the baby was born and then diagnosed with autism a few years later, her health started to unravel. Sjogrens, Hashimotos, transverse myelitis (TM), Hughes Syndrome, Connective Tissue disorder, tendonitis, and so on, all would appear and then fade out eventually. Except, it was the TM that damaged her spinal cord and left her overly sensitized to pain.

Lately she gets sudden onset of fatigue and depression after she goes out into bright sunlight. I've heard that folks with Lupus cannot tolerate the sun. At this point it's too exhausting and expensive to get all the blood tests that are required for the diagnosis.

Thank you for sharing. I have a follow-up appointment with my rheumatologist in May, for now I have one medication aimed at reducing inflammation. Me and my teenage son take walks in the evening. I make sure to apply sunscreen in the morning, and reapply in the evening, in addition to applying off.

My pain has reduced and I make sure to regularly stretch. I also drink a lot of water. I struggle with avoiding sweets. I hope things get better for your wife.

Thank you and good luck! I hope your rheumatologist has good news for you!

I came across this topic on another thread: Fibromyalgia misconceptions and myths.

My experience:
I have tender points, experience muscular knots and muscle spams etc.
I have a hard time taking written notes and usually have to type out my notes.
I’ve tried mechanical pencils and added cushions to my ink pens. I plan to purchase a keyboard for my iPad to make typing easier.

As far as meds and treatments:

•Early on I tried a steroid injection once and it hurt way too much. I also know long term use can result in bone deterioration.

•I tried Flexeril it was too strong and lingered. My rheumatologist then recommended CBD and did a good job of creating a titration schedule but it didn’t help.

•Next I was recommended (same provider) medical cannabis. I prefer gummies and I could sleep through the night like a baby.

•I knew early on that medication and/or medical cannabis would not be my only solutions. My only health insurance is Medicare, which does not cover acupuncture or chiropractor visits (for Fibromyalgia). Luckily in my area massages are not expensive. We have a decent amount of massage businesses to select from.

•I also have a YMCA membership and find deep tissue yoga helpful for my overall health, mental clarity and to loose my stiff/achy joints.

I read a lot of articles from national fibromyalgia and arthritis organizations. My Mighty has good articles too and I like that they publish articles written by individuals with disabilities and chronic illnesses.

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Our insurance doesn't cover acupuncture, either. But my wife's naturopathic doctor administers it as part of an office visit.

One of your posts mentions that pain medication is a possible cause of Chronic Idiopathic Urticaria. I wonder if that's the case with my wife, although she has itchy skin ulcers, not hives.

Her pain management doctor suggested a turmeric supplement. And our local grocery stores are offering whole, fresh turmeric, so we've been adding it to soups and stir fry dishes. Turmeric is supposed to be a powerful anti-inflammatory food. Fresh cracked black pepper is supposed to help with absorption. It's hard to tell if it helps, though.

I’m glad your wife has a naturopathic doctor. We have several functional health doctors, but they do not accept health insurance.

RE: Chronic Idiopathic Urticaria

I initially experienced swelling from infancy through high school and spent a lot of time hospitalized and without answers.

Nothing changed after high school except that I moved out of state. Thirteen years later, I had surgery, and everything went wrong. I returned to my birth state, and the other shoe dropped. Lol. I began experiencing chronic urticaria, formally called autoimmune urticaria, around 2018 after moving back to my place of birth.

I went through a lot of ups and downs trying to figure out the correct diagnosis. I began keeping a journal of everything I ate, any medications I took, changes in weather, etc. I eventually created a symptom tracker chart to make things more efficient. I was experiencing what I now know is Hereditary Angioedema (HAE), which is a rare disease.

Things turned around for me after my immunologist hired a nurse practitioner. She happened to be on call during a flare I experienced early one morning. I was scared and crying emotionally. One of my eyes was swollen shut, and I had a huge knot under that eye. It turns out the NP also has HAE. I immediately had the necessary labs, and my symptom tracker charts (6-7 months of charting) were accepted as evidence. I also had lots of photos and emergency room visits.

I have an official diagnosis of Hereditary Angioedema with normal C-1. Last fall, my experience with chronic urticaria changed. When I experience a chronic urticaria flare, within 1-2 hours, I immediately have a HAE attack. HAE attacks can become severe and cause anaphylaxis.

There are more medications on the market for HAE compared to 20 years ago. All the HAE specialty medications require injections, some intravenous and others subcutaneous. I administer my preventative every other week subcutaneously. My emergency medication and abortive must be administered intravenously.

I still avoid pain medications and prefer medicinals. It's funny you mentioned turmeric. Our weather is changing to cool temperatures and rain. I sliced fresh lemon peels and fresh turmeric (sometimes fresh ginger), then added them to the water and boiled them. I pour the boiled water into my tea infuser. I make a cup of herbal tea and add raw honey. I have a nice collection of herbal teas. I have also heard good things about cracked black pepper.

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I live with a rare disease and multiple (unpreventable) autoimmune diseases and decided to be proactive.

Why Nursing—My Why

I took initiative and began attending trainings, workshops, education events, and webinars. I have had many experiences of being ignored, experiencing medical racism, a lack of continuity of care, and misogyny.

I'm not interested in attempting to change a system that has fought hard to normalize its harmful existence.

My goal is to help create another lane for marginalized BIPOC, Two-Spirit, and Indigenous people. I want to help create care in marginalized communities by marginalized providers.

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“HAE prevention plan: Tips for stopping an attack before it happens”

“Hereditary angioedema (HAE) is a rare genetic disorder that can cause swelling attacks in the limbs, face, upper airways, abdomen, and genitalia.

HAE can occur anywhere on the body. The most common areas are the lips, hands, feet, and the skin around the eyes. It also may occur in the mucosal linings of the respiratory and digestive tracts.

Swelling attacks can happen regularly, often without a known HAE trigger. HAE attacks can be prompted by trauma; viral infections; stress; medical and dental procedures, including surgery and having a tooth pulled; hormonal fluctuations; allergens; and physical activity.

HAE attack symptoms include swollen areas of skin that may be smooth or raised. Symptoms can vary from person to person or even from attack to attack in the same person, and can include non-swelling symptoms.

HAE attack treatment includes learning what the triggers are, which are individual to each person, and short- and long-term preventive treatment with medications. With the right medical care, a person may be symptom-free for years.

In some cases, severe swelling may affect the intestines, causing nausea and vomiting, along with intense pain. Some people may have swelling in the mouth and throat, making it difficult to swallow, speak, and breathe. Breathing problems can quickly become life-threatening emergencies and require immediate medical treatment.

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HAE prevention plan: Tips for stopping an attack before it happens
Last updated Oct. 2, 2023, by Susie Strachan
Fact-checked by Patricia Silva, PhD
What causes an HAE attack?Attack triggersTips for avoiding triggersPreventive treatments

Hereditary angioedema (HAE) is a rare genetic disorder that can cause swelling attacks in the limbs, face, upper airways, abdomen, and genitalia.

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HAE can occur anywhere on the body. The most common areas are the lips, hands, feet, and the skin around the eyes. It also may occur in the mucosal linings of the respiratory and digestive tracts.

Swelling attacks can happen regularly, often without a known HAE trigger. HAE attacks can be prompted by trauma; viral infections; stress; medical and dental procedures, including surgery and having a tooth pulled; hormonal fluctuations; allergens; and physical activity.

HAE attack symptoms include swollen areas of skin that may be smooth or raised. Symptoms can vary from person to person or even from attack to attack in the same person, and can include non-swelling symptoms.

HAE attack treatment includes learning what the triggers are, which are individual to each person, and short- and long-term preventive treatment with medications. With the right medical care, a person may be symptom-free for years.

In some cases, severe swelling may affect the intestines, causing nausea and vomiting, along with intense pain. Some people may have swelling in the mouth and throat, making it difficult to swallow, speak, and breathe. Breathing problems can quickly become life-threatening emergencies and require immediate medical treatment.

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What causes an HAE attack?
For people living with HAE, swelling can partly be caused by an inherited genetic mutation.

HAE attacks are triggered by an overproduction of a protein called bradykinin, which increases blood vessel leakiness and causes edema. Swelling occurs when bradykinin is activated in the deep layers of the skin, causing fluid to flow from the bloodstream into nearby tissues.

There are three types of HAE:

Types 1 and 2 are caused by mutations in the SERPING1 gene, which is involved in making a type of protein called C1-inhibitor. When there isn’t enough of this protein, bradykinin levels can get too high and cause an attack.

Type 3 HAE is caused by mutations in genes other than SERPING1, including the F12 gene. These mutations can trigger an inflammatory response and subsequently make bradykinin levels get too high and lead to an attack.

HAE attack triggers
Hereditary angioedema triggers include trauma, viral infections, stress, and medical or dental procedures. Other triggers are allergens, hormonal fluctuations, and repetitive physical activities.

Allergens
Exposure to common foods or environmental factors can trigger HAE attacks. A small study reported foods including milk, apple, pineapple, onion, garlic, fish, citrus fruits, strawberries, and cheese could be possible triggers. HAE attacks can seem similar to other kinds of allergic reactions.

Hormonal fluctuations
Changes in hormone levels also can trigger hereditary angioedema attacks.

Puberty can cause HAE symptoms to become more frequent and severe, particularly for girls.

Hormonal fluctuations during menstruation, menopause, pregnancy, and breastfeeding can lead to more frequent attacks, according to the International WAO-EAACI guideline for the management of HAE.

Birth control pills, which contain artificial female hormones, can trigger attacks.

Pregnant women should be monitored by an HAE expert, in addition to their obstetrician-gynecologist. With good management of the disease, most women will have a successful pregnancy and delivery.

Physical activities
Doing repetitive activities that put pressure on one part of the body for a long period of time may trigger swelling attacks in people with HAE. This could include gripping a tennis racket, typing, or tightly holding a tool such as a hammer.

Physical trauma, illness, and medication
Physical trauma, including from surgery or an accident, can cause an HAE attack in the affected area of the body.

Infections are a common trigger for HAE attacks in children and adults, so steps should be taken to limit exposure to viruses and to stay up to date with recommended vaccinations.

High blood pressure medications containing ACE inhibitors may increase the frequency or start of HAE attacks and should be avoided.

Emotional stress
A work-life imbalance, family problems, and the loss of a loved one can be some sources of emotional stress. People living with HAE also may find having unexpected, disfiguring, and painful attacks stressful.

Stress can lead to anxiety and depression, and affect quality of life.

Surgery
Procedures associated with the upper digestive tract, such as surgery or dental surgery, can cause swelling at the site of the surgery, usually within 48 hours.

For example, having a tooth removed causes swelling in more than one-third of people with HAE if preventive treatment is not provided before the procedure.”

Hereditary angioedema triggers: Tips for stopping an HAE attack | Angioedema News

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You're amazing; well done! I truly hope you achieve your goal!

And thank you for the info on HAE. I've never heard of it.

This might sound weird, but I've wondered if inflammation is related to tidal action. My idea is that since the moon can greatly influence Earth's bodies of water, it can affect our body of water.

Did any of your tracking involve tides or moon phases?